My 28 Days - a global digital women's health initiative for evaluation and management of secondary amenorrhea: case report and literature review.

There is a need to close the gap between knowledge and action in health care. Effective care requires a convenient and reliable distribution process. As global internet and mobile communication increase capacity, innovative approaches to digital health education platforms and care delivery are feasible. We report the case of a young African woman who developed acute secondary amenorrhea at age 18. Subsequently, she experienced a 10-year delay in the diagnosis of the underlying cause. A global digital medical hub focused on women's health and secondary amenorrhea could reduce the chance of such mismanagement. Such a hub would establish more efficient information integration and exchange processes to better serve patients, family caregivers, health care providers, and investigators. Here, we show proof of concept for a global digital medical hub for women's health. First, we describe the physiological control systems that govern the normal menstrual cycle, and review the pathophysiology and management of secondary amenorrhea. The symptom may lead to broad and profound health implications for the patient and extended family members. In specific situations, there may be significant morbidity related to estradiol deficiency: (1) reduced bone mineral density, 2) cardiovascular disease, and 3) cognitive decline. Using primary ovarian insufficiency (POI) as the paradigm condition, the Mary Elizabeth Conover Foundation has been able to address the specific global educational needs of these women. The Foundation did this by creating a professionally managed Facebook group specifically for these women. POI most commonly presents with secondary amenorrhea. Here we demonstrate the feasibility of conducting a natural history study on secondary amenorrhea with international reach to be coordinated by a global digital medical hub. Such an approach takes full advantage of internet and mobile device communication systems. We refer to this global digital women's health initiative as My 28 Days®.

From fire in the belly to a boiling heart: fuel for participatory research.

It has been said that governmental bureaucracies lack the animating life force that is normally provided by the human conscience. Research efforts that include patients and their representatives in the planning and regulatory process can add back this animating life force, a force Friedrich Wilhelm Nietzsche describes "... that your self be in your deed as the mother is in her child-let that be your word concerning virtue." This paper comprises our invited introductory remarks as patient activists at this symposium, entitled "The Menstrual Cycle and Adolescent Health" and held in Potomac, Maryland in mid October 2007. Attendees included patients, patient advocates, and experts from a variety of fields and disciplines. While our stories have their share of pain, that pain developed into a passion to help others in similar circumstances. A consortium of passionate community activists interested in the menstrual cycle could play the role as a "governmental conscience" around this issue. Developing a community consortium initiated via partnerships between patient advocates and investigators could direct more attention and funding toward menstrual cycle research.

Passion for participatory research on the menstrual cycle.

A two-day symposium entitled "The Menstrual Cycle and Adolescent Health" was held in Potomac, Maryland in mid October 2007. Groups sponsoring the meeting included the Department of Health and Human Services (DHHS), the National Institutes of Health (NIH), the National Institute of Child Health and Human Development, the American Society for Reproductive Medicine, the NIH Office of Research on Women's Health, the NIH Office of Rare Diseases, the U.S. Food and Drug Administration Office of Women's Health, the DHHS Office of Women's Health, and Rachel's Well, Inc. Attendees included patients, patient advocates, and experts from a variety of fields and disciplines. The effort identified areas in which there are only sparse data from which to create evidence-based recommendations for management of menstrual problems in young adolescents. In a final session of the meeting, participants worked together to develop a manifesto regarding research on the menstrual cycle in adolescents, which is the subject of this report. The group reached two major conclusions. First, there is need for a new research model that integrates grass roots community passion for participatory research with research planning and regulatory oversight. Second, there is a need for a coordinated research effort on the menstrual cycle and its disorders in adolescents. This could initially take the form of a Study of Puberty across the Nation (SPAN), similar to the Study of Women across the Nation (SWAN) that addresses the normal menopausal process.